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2nd Annual "Shine Like Ozzie" Scholarship Coming Soon

Jordan's Guardian Angels is proud to announce the 2nd Annual "Shine Like Ozzie" Scholarship. Opening December 31st, 2022, this $1,000 scholarship is for a student (undergraduate or postgraduate) studying anything related to Epilepsy.

Last year, in its infancy, the Shine like Ozzie Scholarship had 15 applicants which is above and beyond anything Jordan’s Guardian Angels anticipated. We are so very grateful the rare disease community came together to spread the word and apply, and we are hoping to expand further this year.

Many members of our Jordan’s Syndrome community suffer from Epilepsy and debilitating seizures. That’s why research on Epilepsy is so important to us. It’s why we have joined the Rare Epilepsy Network, a partnership we are immensely proud of.

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Most importantly, this scholarship is in loving memory of Ozzie Deason and all the other children our community has lost. Ozzie lost his life after a battle with Epilepsy and Jordan’s Syndrome.

“The Shine like Ozzie scholarship is extremely meaningful to our family for so many reasons. Epilepsy ravaged our daily lives and stole so much from Ozzie, and we understand how critical it is for families to find the appropriate Epilepsy care,” said Leah Deason, Ozzie’s Mom. “We are overjoyed to know this scholarship will go toward training Epilepsy focused doctors which the Epilepsy community desperately needs. We hope that Ozzie’s story will fuel the desire to help other children like him and be a guiding light in educating others on the importance of ending Epilepsy.”

We hope to continue this tradition for years to come with new applications open annually on Ozzie’s Birthday, December 31st. May his light and the light of all our children forever shine.

Applications close January 31st, 2023, and the awardee will be announced on Rare Disease Day, February 28th, 2023.

Published

December 2, 2022

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New Jordan's Syndrome Publication Released

A new publication produced by some of the most respected geneticists in the world including Dr. Ghayda Mirzaa, Dr. Wendy Chung and Dr. Veerle Janssens from our very own research team provides new insight into Jordan’s Syndrome.

The study documents 76 cases of Jordan’s Syndrome and provides new details into the genetic mutation. 

The publication details a significantly expanded series of individuals with PPP2R5D variants enabling the experts to better characterize the association of this gene with neurodevelopmental disorders, neurobehavioral issues and other notable clinical features, as well as further our understanding of the molecular function and biochemical properties of causal PPP2R5D variants.

The clinical, molecular and functional data from this study could have important consequences for clinical evaluations and aid in the future treatment for affected individuals.

Read the full publication here.

Listen to or watch our new podcast as Dr. Mirzaa and Carole Bakhos take a deep dive into the new publication. 

Published

November 14, 2022

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Welcoming our New JGA Families

ATTENTION **NEW** JORDAN’S SYNDROME AND JORDAN’S GUARDIAN ANGELS FAMILIES! THIS POST IS FOR YOU!

Hello to all of you, our newly diagnosed families. We are so happy you are here, that you have found us, and that you can now join our efforts to find a treatment or a cure for Jordan’s Syndrome. Together we truly can change the world.

Let’s start by saying that you may be feeling overwhelmed, anxious, even a bit sad or confused right now and that’s ok. Know that this post is here for you. If you want to wait to read it, that’s ok…. It will be here when you’re ready and so will we.

That said, if you’ve continued reading, great! Please know that you are not alone anymore. There are more than 200 families in 35 countries around the world that are here to support you, trade stories and experiences with, ask questions to and gain hope and understanding from. We are here for you. The Jordan’s Guardian Angels team is here for you, and our team of brilliant researchers are here for all of us as they work diligently and tirelessly for a treatment or a cure for Jordan’s Syndrome. We are closer than ever to that goal.

We recently published a podcast on 11/29/21 that goes through every aspect of being a newly diagnosed Jordan’s Syndrome family.

Some of the topics include:

-What is Jordan’s Guardian Angels?
-How to take advantage of our online community
-How to join our informal database
-Background on the research
-What is Simons Search Light? And how to you provide EEGs and MRIs to Seattle Children’s?
-How do you help spread awareness?
-How can I get involved and support the effort?
-What is the medical kit and what do I do with it?
-What social media does JGA utilize?
-Where can I listen to the podcast?
-What resources are available and how can I easily find them?
-Where do I go when I have more questions?

PLEASE, take a moment and listen or watch. We know that it will be worthwhile.

Here’s how to connect:https://jordansguardianangels.org/a-rare-reality/

We are a small part of your family now and you are a big part of ours. If you have any questions or concerns, please feel free to email us at info@jordansguardianangels.org, find us and connect on Facebook, and let’s travel this road together.

Published

November 30, 2021

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Empowering our JGA Community: the Importance of Self-Advocacy

As our Jordan’s Guardian Angels and Jordan’s Syndrome community continues to grow, one of the conversations we often have is about self-advocacy: how to teach our kids to advocate for themselves and feel empowered to talk about their Jordan’s Syndrome diagnosis, but also their needs, wants, and desires. Research shows that when our children are bringing more to the classroom all of the child’s peers benefit from the learning opportunity.

Christina Janes, Director of Outreach and Awareness for Jordan’s Guardian Angels (JGA) recently sat down with Carole Bakhos, Project Director for JGA and we discussed how her daughter, Yara, is learning to self-advocate, how inclusive education is so important and how to get the community to accept differences as well.

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Christina: How has your experience with public schools been so far?

Carole: We’ve had positive experiences with public schools so far. The main reason is the fact that we realized early on that we need to be driving that education bus. As a result, my husband and I work on self-educating to have the tools to advocate for what our daughter needs. Our main goals: access to the curriculum and access to friends… sounds simple but a 40-page IEP (Individualized Education Program) is still necessary as most schools are not established with universal design methodologies and classrooms in place. Inclusive education should not be a fight or a privilege but a right. We wouldn’t change our children for the world. Is this world ready for what children with disabilities have to offer?

Christina: Do you think schools (at least in your area in Colorado) are doing enough to create an inclusive school community for children with disabilities?

Carole: Schools are doing a better job integrating children with disabilities, but are they being included? Inclusive education designs different access points to the curriculum for children that need additional help as well as those that need to be challenged. Decades of research shows the benefit of inclusive education for children with disabilities as well as their classmates. I want that for my daughter and my son alike.

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Christina: How do you think Yara’s experience will be different then when Mazin
(her Brother) goes to school?

Carole: While Yara’s little brother hasn’t started school as yet, I can tell you from now that his experience will be different from his sister’s. Jordan’s Syndrome has caused Yara to have to work harder for what comes natural to most. She walked around her 3rd birthday and first talked at 5. Before then, she used a walker to get by and sign language and a communication device to communicate. Even today, at 3rd grade, Yara has a 40-page Individualized Education Program (IEP) mostly full of accommodations that enable her to thrive fully in the general education environment.

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Christina: How much do you believe inclusive education has benefitted Yara in the long run?

Carole: I often reflect on our experience with Yara and how different she would be today if she was judged from preschool age and had to adhere to all these limitations and boundaries. By learning alongside her peers, Yara is able to read and do math at her grade level today. She comes home and shares about her day, most of her stories involve another student in her classroom… Through inclusive education, Yara was able to shatter all expectations and to amaze her teachers and peers just like she amazes us daily. I know, without a doubt, that none of that would have been possible without this rich educational setting she’s been emerged in.

Christina: I know Yara is a terrific self-advocate, and she recently had a chance to teach her classmates all about herself and her Jordan’s Syndrome diagnosis. Tell me about that!

Carole: Earlier this month, our family shared with Yara’s classmates regarding Jordan’s Syndrome. Yara wanted to be open about her diagnosis in an effort to normalize disabilities and look past the differences. The classroom read the book written by Jordan’s Guardian Angels “Let’s be Friends” about a little girl, Sarah, also living with Jordan’s Syndrome and prepared questions for us. Yara is leading her way along her peers to embrace their identities and celebrate the richness of diversity.

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Published

October 21, 2021

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Families, Researchers from Around the Globe Discuss Groundbreaking Research

From Australia to the UK, Columbia to New Zealand and everywhere in between, families from all over the globe united outside San Francisco to fight for a cure to Jordan’s Syndrome, a rare genetic mutation linked to Autism, Alzheimer’s and even cancer.

44 families came together at the second annual Jordan’s Guardian Angels Family Conference in Burlingame, joining the Jordan’s Guardian Angels research team to learn about the latest breakthrough discoveries in our quest for a cure.

Jordan’s Syndrome, a mutation on the gene PPP2R5D, causes developmental delays, global hypotonia, and in some cases, seizures and autism symptoms.

"Jordan's Guardian Angels brought us all together... these strangers from around the world. We laughed, cried, danced, shared experiences, and built lifelong relationships,” said Carole Bakhos, project manager, whose daughter Yara has been diagnosed with Jordan’s Syndrome.

Researchers from nine universities across the U.S. and the world are joining in an unprecedented partnership to work collaboratively toward finding treatments to reverse or cure Jordan’s Syndrome. They provided promising updates on their progress, met individually with families, and collected blood samples given bravely by our children to be used for further study.

“Our research is always designed to move from bench to the bedside, from the laboratory to the patient. Having so many Jordan’s Syndrome families come together in one place makes the work we do so much more real and significant. We see the very people we’re trying to help, and it truly makes a difference,” said Jan Nolta, director of the UC Davis Stem Cell Program and the university’s Institute for Regenerative Cures in Sacramento. UC Davis is one of the institutions partnering on the research.

More than 80 people across the world have been diagnosed with Jordan’s Syndrome, though it’s believed there could be hundreds of thousands of undiagnosed cases.

The Jordan’s Guardian Angels global community was well-represented in Burlingame, with attendees from: Argentina, Australia, Austria, Canada, Colombia, Denmark, India, Ireland, Israel, New Zealand, Norway, Sweden, the Netherlands, the United Kingdom and multiple states across the United States.

“We now know, without a doubt, that we will never feel alone on this journey again,” Bakhos said. “We will continue to march hand in hand, motivated by our children. Our hard work and determination will make a difference in this world; it just has to!"

A huge thank you to all of our families, many of whom traveled thousands of miles to be in Burlingame. Without you, this journey would not be possible. Thank you to our international dream team of researchers, whose brilliance and dedication is driving this research forward to find answers that may help unlock answers for not only our children, but potentially millions more. Finally, we would be remiss without thanking Tree House Tribes, whose volunteers led multiple children's workshops throughout the conference.

Published

April 4, 2019

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Hundreds Come Together in Fargo, Raise Money for Research

On a frigid night in Fargo, North Dakota, the giving spirit warmed the hearts of Jordan’s Guardian Angels families across the world. More than $125 thousand was raised for our research at the Diamonds and Denim Gala.

The charity event was hosted by Jessica and Jeff Laliberte, and Savannah and Sydney Glover. Sydney is one of more than 80 children to be diagnosed with Jordan’s Syndrome, a rare genetic mutation on the gene PPP2R5D linked to Autism, Alzheimer’s, and cancer. Jordan’s Syndrome causes significant developmental delays, global hypotonia, and in some cases seizures and autism symptoms.

Multiple families from the Jordan’s Guardian Angels community were in attendance from all over the U.S., including Jon and Stacy Kelley, who gave a heartwarming speech about their quest to find a cure for their daughter Vivian.

Dr. Brian Wadzinski from Vanderbilt University, a member of our international research team of geneticists, medical investigators and scientists, updated attendees about the amazing potential for our research – and the encouraging progress that’s already been made in the first year of the study.

The crowd was entertained by Christian Guardino, a former America’s Got Talent semi-finalist. Christian performed several times and also shared his inspiring story of how experimental gene therapy cured his blindness.

A special thank you goes out to Jessica, Jeff, Savannah, and Sydney – and to everyone who made the Diamonds and Denim Gala such a special evening. The impact will be felt around the world!

Published

March 15, 2019

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Jordan’s Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above.